Time to reinvent the science of dementia: the need for care and social integration

Abstract

Objectives: The increasing number of older adults with dementia is a large and growing public health problem. Alzheimer's disease, the prevailing form of dementia, is projected to quadruple worldwide. To date, the care and social integration of individuals with dementia is complicated by limited collaborations between biomedicine and other disciplines. The objective of this paper is therefore to reflect on the orientation of biomedicine with regard to the science of dementia, and to articulate a path for moving forward. Methods: The authors drew upon, and expanded, the insights of an interdisciplinary, international workshop entitled ‘Bioethics and the Science of Aging: The Case of Dementia’ held in October 2012 at the University of California in Berkeley.Results: The care of individuals with dementia compels solid interdisciplinary collaborations. There are several issues affecting the care of individuals with dementia: (1) an evolving definition of dementia; (2) the ambiguous benefits of the diagnosis of dementia; (3) ethical conflicts concerning consent processes and clinical trials; and (4) a limited understanding of the perspective of the person with dementia.Conclusion: We argue that it is time for a renewed dialogue between biomedicine and other disciplines -- particularly public health, the social sciences, the medical humanities and bioethics. This interdisciplinary dialogue would facilitate a process of self-reflection within biomedicine. This dialogue will also provide the foundation for equitable public health interventions and will further prioritize the values and preferences of individuals with dementia, as well as their care and social integration.

Keywords:

• dementia and cognitive disorders
• policy, ethics, and law
• psychological and social aspects
• screening and diagnosis
• neurosciences

Acknowledgements

The authors would like to thank the two anonymous reviewers for their thoughtful comments on earlier versions of this article.

Note

Notes

1. The workshop included interventions from Jesse Ballenger (Pennsylvania State University), Patrick Fox (University of California in San Francisco (UCSF), Institute for Health & Aging), Jodi Halpern (University of California, Berkeley (UCB), School of Public Health), Cori Hayden (UCB, Anthropology Department), Roberto Illa (Chico, CA), William Jagust (UCB, Helen Wills Neuroscience Institute), Linda Johansson (Jön-Köping University, School of Health and Welfare), Robert Knight (UCB, Helen Wills Neuroscience Institute), Joel Kramer (UCSF, Memory and Aging Center), Thomas Laqueur (UCB, Department of History), Margaret Lock (McGill University, Social Studies of Medicine), Guy Micco (UCB, Science, School of Public Health), Stephen Post (State University of New York Stony Brook, Center for Medical Humanities Passionate Care, and Bioethics), Silke Schicktanz and Mark Schweda (University of Göttingen, Department for Medical Ethics and History of Medicine), Scott D. Selberg (New York University, Department of Media, Culture and Communication), Aagje Swinnen (Maastricht University, Center for Gender and Diversity), Charis Thompson (UCB, Department of Gender and Women's Studies), and Manuel Trachsel (University of Zurich, Biomedical Ethics). The event was sponsored by the University of Göttingen in Germany, and cosponsored at UCB by the Center for Science, Technology and Medicine, the Center on Aging, and the Helen Wills Neuroscience Institute.